Right now, I am in the process of de-iodizing myself
Iodizing is the process of adding Iodide (usually in the form of potassium or sodium iodide), a critical trace mineral for human thyroid function, to food (usually to table salt); to prevent Iodine deficiency.
Iodine deficiency is the leading cause of preventable mental retardation worldwide; through the suppression of thyroid function...
And I'm doing it to myself intentionally.
As I wrote a few weeks ago, I will be undergoing high dose radioactive iodine treatment for my cancer.
We are literally going to nuke my remaining cancer; though from internal circulation, not from orbit.
So, we've been preparing for the process for the last few weeks.
To prepare for the process, you cease thyroid hormone supplementation for up to four weeks; which causes your body to flood your system with the hormones that tell your thyroid tissue (in this case, the small specks of cancerous thyroid tissues floating around my blood stream, and implanted in my other endocrine glands) to make more thyroid hormones; which in turn causes that tissue to take up as much iodine as possible (which it needs to make said hormones).
At the same time, you go on an ultra low iodine diet, to starve your remaining (cancerous) thyroid tissue of the iodine it is desperately trying to take up.
Once your remaining cancerous tissue is trying to suck up as much iodine as it possibly can, they give you a dose of Radioactive Iodine-131. This tissue then sucks in all that iodine you just flooded your system with, which hopefully kills it.
My thyroid was removed four weeks ago today; and I haven't had any thyroid replacement therapy, since we wanted to be able to do the radiation as quickly as possible after the surgery (four weeks is the minimum).
I was already hypothyroid before surgery (and experiencing a lot of the nasty effects thereof), and have been at a "subclinical" level for a long time (they didn't want to supplement me for fear of it worsening the cancer); but I at least had SOME thyroid hormones being produced.
The dosage of levothyroxine supplementation my docs calculated I would need would be 400mcg per day. Now of course, no thyroid, no thyroid hormones without supplementation; and no supplementation in order to prepare for the radiation.
As I said above, hypothyroidism causes some rather unpleasant symptoms and side effects. You can see the full list here, but I'm just going to list the ones I'm dealing with at the moment:
- Cold intolerance
- Poor temperature regulation
- Low basal body temperature
- Weight gain
- Water retention
- Puffy face, hands and feet
- Bradycardia
- Decreased sweating
- Muscle cramps
- Joint pain
- Dry, itchy skin
- Fatigue
- Impaired memory
- Impaired cognitive function (brain fog)
- Inattentiveness
- Sluggish reflexes
- Increased need for sleep
- poor sleep regulation and disturbed sleep cycles
- Irritability
- Rapid thoughts (or worsening of ADHD)
- Elevated serum cholesterol
- B12 deficiency
- Decreased sense of taste and smell
- Decreased testosterone synthesis
- Decreased libido
- Poor muscle tone (muscle hypotonia)
That's a big list... And yeah, we're deliberately making it worse.
And yes, it sucks.
But hey, I'm alive, and getting better; and once the cancer is gone, and we can get my hormone medications balanced, hopefully there's nothing in that list that either can't be treated, or won't get better on its own.
So, as I said, I have been sans thyroid for four weeks... And according to tests taken last week, my body is now as starving for thyroid hormone (and therefore iodine) as it's going to get.
So, because I'm ready now, and to get the radiation going as soon as possible; the docs scheduled me into the soonest available slot after my minimum four weeks...
...and I begin my first course of radiation this Thursday.
I've also been on a generally low iodine diet for a while (we don't eat processed foods for the most part, we don't use iodized salt, we don't eat a lot of seafood etc...); but I hadn't gone whole hog with the full restricted iodine regime.
Why?
Because a full low iodine diet SUCKS.
This is what you can't eat at all:
- Iodized anything (obviously)
- Dairy of any kind (no milk, cheese, eggs, butter)
- Soy products of any kind
- Seafood
- Sea salt
- Any product derived from the ocean in any way (seawater has lots of iodine)
- Most processed or commercially produced foods (soy based or seaweed based additives)
- Any red bean or legume
- Potato skins (the skins collect iodine, but the starch is fine)
- Commercial bread (dough conditioners and additives have soy, seaweed, and iodates)
- Cured meats or cured foods of any kind (commercial curing agents have trace amounts of iodine)
- Any brine injected meat (the brines may contain iodide or iodate)
- Much of the meat at supermarkets (because of the injecting) particularly pork and chicken
- Any product with added salt (unless you can verify that it's not sea salt or iodized salt)
- Any restaurant food (unless you can verify they don't use iodized or sea salt)
- Certain food colorings
- Preserved or concentrated foods (often have iodine in their stabilizers and preservatives)
And you need to limit:
- Chicken (unless it's free range, organic, and not feed supplemented, animal feeds contain iodine)
- Beef (unless it's grass fed raised in a low iodine soil area)
- Pork (unless it's organic, and not feed supplemented, from a low iodine area)
- Other meats and poultry
- Rice
- Certain nuts
- Pasta
- Processed grains (except organic grains, grown in low iodine soil, which includes local soil here)
- Products with high or added potassium (small amounts of natural potassium iodide or iodate can be in them
Ever notice EVERYTHING HAS SOY NOW? Seriously, it's in frikken everything.
All the "natural" and "organic" stuff, that you would hope would be OK? Yeah they all use sea salt.
You'd be amazed at how many products out there have soy, or sea based additives, or iodine based additives... It's really best to just avoid commercial food products of any kind.
Oh and I can't take the potassium supplements that I require (because of my other medications), though I can at least replace that with orange juice.
So... what CAN I eat?
Pretty much I can eat home baked bread (which we do love anyway), black beans, peeled potatoes, most fruits and vegetables; and any condiments that I can verify don't have iodized salt or other iodine containing additives.
In theory I need to limit my meat intake to two servings of four ounces per day, and my grain servings (including rice) to four ounces per day.
I would starve to death. That would be something like 800 calories per day. After a couple weeks I'd be severely malnourished (especially since I can't take most supplements... sea products, soy products etc...).
My docs are fine with me eating more than the standard guidelines, since the guidelines are calculated for a 140lb woman; so long as I am careful about avoiding all direct iodine sources etc...
Worse, I have to stay on the diet until I'm done with the radiation (2-6 months from now); because we're compressing it as much as possible; and if I need a second or third dose, I need to minimize the iodine taken into my body, and maximize the amount I'm flushing out of my system (thus maximizing my recovery speed).
Ok, now, what about the radiation?
Clinical doses of radioactive Iodine vary from as little as 8 millicuries, to as high as 200 millicuries. They rarely use dosages over 150 millicuries, because the incidence of negative side effects are very high (including sterility, and damage to salivary glands).
I-131 has a half life of 8 days, and an effective dosage of under 5 millicuries is considered effectively zero. Also, your body can flush out some of the iodine itself, so the dosage will go down faster than its half life; because of this, the average effective halflife in clinical testing is 6 days.
Because of my bodymass, and the aggressive malignancy and vascular infiltration of the cancer, my care team are going to be as aggressive as the cancer is; we really are going to "nuke it from orbit, because it's the only way to be sure", so they're hitting me with 150 millicuries.
Given the six-eight day halflife in the body of I-131, and the 150mCi dosage, I will need to be in isolation for 4-6 days; and it will take 30-42 days to flush the radioactive iodine out of my system to a clinically insignificant level (and I'll likely set off radiation detectors for 60-90 days).
Normally that would mean I could be around people for short periods of time after a week or so, and "normal" routines after three to four weeks... But there's a complication with my wife being pregnant.
I have to be in total isolation, until another persons effective received dosage standing near me is less than 50uSv/h. I can't be around other people for any length of time, until they would be receiving under 10uSv/h. I can't be around my pregnant wife at all (more than six feet away, preferably with a wall between us) until her effective received dosage is under 5 microsieverts per hour; and we can't sleep together until it's below 1 microsieverts per hour.
NOTE: This is a ridiculously conservative number. There is no detectable increase in health risk at dosage rate less than 100 uSv/h, and that requires a 10,000 hour exposure.
Eat 10 bananas, you get about 1 microsievert dosage. An airline flight gets you between 2.3uSv/h and 4.0uSv/h. The worldwide average background radiation dosage is 0.23-0.27uSv/h to, so just being alive and on the earth for a day, you get about 6-7 microsieverts of effective dosage. The Washington state average (I couldn't find the numbers for Idaho) effective background radiation is about 3,600 microsieverts per year, or about 10 microsieverts a day.
The standard for pregnant workers is under 5,000 microsieverts over the entire course of the pregnancy. Given the 200 or so days remaining, we would have to be in bed together all day every day of that entire time period to even meet the occupational safety limit (and we still wouldn't exceed it) which in and of itself is designed to have huge safety factors. Non pregnant workers are allowed up to 50,000 microsieverts a year occupational exposure; 10 times as much, and that has a 10 times safety factor from what is known to be harmful long term.Given the variables of my bodymass, the dosage, and the flushout rate, this could take anywhere from 3 days, all the way to four weeks, and the only way to know, is to measure.
And of course, that's for each dose; and it may take up to three doses over six months.
There is no way I'm not going to come within six feet of my wife for six months...
So, we're going to measure it:
A friend bought us a dosimeter in exchange for some gunsmithing work; a Radex RD1706. That way we can measure background counts, surface counts and spot counts; and know fairly conclusively when my wife and I can sit together, and when we can sleep in the same bed again.
A few weeks after my dosage, they'll body scan me. Based on what they see then, they'll calculate a time when I should have no live cancer cells left, and have the I-131 flushed out; then they'll give me a tracer dose, and scan me again.
If that scan shows clear, GREAT
If not, which again given my size, the size of the cancer, the vascular infiltration, the type and pathology of it (it was a poorly differentiated cancer which responds poorly to iodine, but it was also follicular, which responds better to iodine), there is a pretty good chance of; I get to wait two to four more weeks (to re-starve the body of iodine) and then another dose.
They'll generally do this for a maximum of three dosages; at which point over 96% of patients will have no detectable cancer.
If I still have cancer at that point... There's something else going on; a non-thyroid cancer, or a poorly differentiated metastasis (which is a much more serious issue).
Once we have finished the final radiation treatment, it will take a month to six weeks to completely flush out my system; and another month or so to fully recover, and to get my medications adjusted properly.
So, at a minimum, a bit less than three months from now, to at a maximum about six months from now; I'll be good to go.
